March Update 2018

Our little girl is growing and improving all the time. So much has happened since our last update but it would take forever to cover everything since Christmas. The highlights are that we all had a lovely Christmas. Rosie has settled back at school well and is now attending full time, five days a week. She loves school, has some lovely friends and teachers and particularly enjoys cooking. Rosie has made fantastic progress with her eating. She typically enjoys approximately 20 spoonfuls of puréed food orally each day now, her favourite is curry! Rosie is gaining weight, has more energy and is sleeping better as a result.

Capitalising on her additional strength and energy, and using some of the funds raised by Rosie’s kind and generous supporters, we booked a two week intensive physiotherapy block with Kids Physio Works. Rosie attended every day for two weeks. She worked incredibly hard and made great progress. At the start of the two week block, Rosie could not sit cross legged and unaided for more than ten seconds. By the end of the two weeks, she sat unaided for sixty seconds. At the start of the block, Rosie was attempting to lift one leg but not both when walking with assistance. By the end of the two weeks, she was activating her muscles in both legs. Her head and trunk control have further improved. As a result, we are now looking at purchasing a therapy bench and a walker for Rosie. Both are pieces of specialist equipment that will enable us to continue Rosie’s therapy at home.

We are fortunate that we can fund these thanks to Rosie’s many supporters who have donated to her JustGiving Rosie’s Rehabilitation Page. As part of the intensive course Mummy and Daddy were given tips on how we can continue the work while at home. George has also joined in doing good propping to strengthen Rosie’s core.

We hope to book another intensive at Easter. The last few days have meant no school and lots of fun in the snow. Rosie has loved playing with our wonderful neighbours and whilst she can’t stay out in the cold for as long as the other children, she equally enjoyed warming up in the village pub with the adults while the other children continued to play.